I Don’t Want to Have Children and I Have Endometriosis
What are you going to do with me?
Endometriosis is widely accepted as the leading cause of infertility in women*. It’s also one of the 20 most painful illnesses in the world, according to the NHS. Funnily enough, when trying to draw attention to this very common yet shamefully under-researched and under-represented condition, people always mention the infertility bit. This is the attention grabber. “She can’t have kids!” is more horrifying news than “She lives in constant pain!” Why do we care more about women being able to have children than women living a pain-free life?
Motherhood is a Choice
Before my first laparoscopic surgery for endometriosis, one of my main concerns was my fertility. I wasn’t afraid I was going to lose it — I was afraid it was going to be prioritized over my well-being.
My story is, sadly, quite the cliché: persistent pelvic pain, chronic (lower) back problems, neuropathy, bloating, nausea, fevers, peaking with excessive bleeding and debilitating menstrual cramps. I’ve written at length about the difficulties I’ve faced on my path to diagnosis, as well as my struggles with pain management and everyday life as a chronically ill person. There’s one part of my narrative that disqualifies me from being the perfect endo poster-girl, though: I don’t want to have children.
Maybe you’ll change your mind!
I’m thirty-two years old — so, not a young girl. I’m in a long-term relationship — so, not in denial because I haven’t met “the one”. I’ve been in several ‘forever’ relationships — none of those ‘forevers’ had children on their vision boards. I’ve lived and worked in four different countries on three different continents — so, I’ve seen the world. I’m completing my doctoral degree — so, I’m well educated. I’m financially independent — so, I’m not waiting for ‘the right time’. I just don’t want children.
You might think this paragraph is overkill. It’s not. Just look at the news: the biggest story out there right now is Jennifer Aniston explaining why she never had children. One of the world’s most successful actresses with a career in TV and film spanning 35 years, Aniston finally told the world the only thing it really wanted to know: why she’s not a mother. Her reasons are irrelevant. Decades of her deliberate silence on the issue being maddening to the public is what is relevant. The media’s undying obsession with her reproductive organs proves that we still, very much so, believe women should have children. We are bewildered when they don’t. A woman who is not a mother is a wild, burning question mark.
My reproductive organs are not my own.
Going into surgery, I had one clear goal: I wanted a pain-free life. I knew very well that the odds were stacked against me. Endometriosis has no cure. The best surgery can offer is a few good years, and damn — I wanted them.
One of my ovaries was malfunctioning, suffocated by a huge blood-filled endometrioma, and I wanted it gone. The state of the rest of my reproductive tract was still a mystery at that point. I made it crystal clear to my surgeon — if she opens me up and sees intricate damage, something very difficult to repair, anything to indicate that I would still remain in pain, I wanted her to take the organs out. I said it once, twice, three times. I said it again before signing the paperwork, which is when she finally pulled the fateful paper away and answered truthfully: “I can’t.”
Her problem wasn’t personal, it was legal. My wish was a nuisance. She realized I wouldn’t let it go, so she temporarily pulled the plug on the surgery. She could promise to remove only the more damaged ovary, if she deemed it beneficial during the time of surgery, but only after legal procedures were put into place: I needed a psychological evaluation (because, clearly, there’s a high possibility that I do not want children for reasons of insanity), and she needed proof that should one ovary be removed, the other would theoretically still have the capacity to produce a viable egg.
How utterly insulting to both of us. I was made blatantly aware that I do not own my reproductive organs. My reproductive organs must be protected from my irrational desire to stay childfree at all cost. My surgeon was put into service of the state and not her patient. She would suffer the wrath of the state if it were to happen that I, her patient that consented to surgery under no duress, just happened to change my mind about having children in the future and decided to sue her. Everyone would be on my side in this scenario, I would not be insane then. If I were to change my mind a decade later, I would be the poor woman who wasn’t thinking clearly, and she would be the ruthless scalpel holder that deprived me of the world’s biggest joy — motherhood.
She didn’t remove the ovary. I’m not sure if it was medical judgment or fear. I’m pretty certain she isn’t quite sure either.
When do I get to make the decisions?
Read that paragraph again — the one in which I write about all the things that I believe constitute me a rational, capable, experienced adult entitled to make informed decisions about her own body. I’m still considered unfit to choose to be childfree. The concept of choosing against motherhood is still considered outlandish, and, by many, simply wrong.
When you tell people you don’t want children, the friendly and sympathetic ones will tell you that you will “soon meet the right man” and that you’ll discover the “joys of motherhood” and never look back. “It’ll happen for you, too, honey,” is what the warm, concerned smiles say. Those who are impatient about the audacity of “the modern woman” will call you selfish and immature. Those who believe in tradition and “the order of things” will call you disruptive and broken; if they’re religious, the accusations will be even worse.
So, tell me, what do you think? What other achievements, milestones, and life experiences do I need to add to my CV to make all these people believe that I’m capable of deciding not to have children?
Endometriosis is Not Just Infertility
“You will have no problems conceiving!” — this is the glorious sentence doctors gleamingly tell you after they have successfully cleaned up as much of the mess that endometriosis created in your body as they were able to.
This sentence does not mean that you are cured. This sentence does not mean that you are well. This sentence says nothing about your symptoms or your quality of life. This sentence says that you can have children.
Most of all, this sentence is a cover-up. You are expected to be so overjoyed and relieved at the prospect of having children that, at least for a while, you forget that you’re still sick and that no one knows how to help you. How annoying we must be, the women that this doesn’t work on.
What are you going to do about me, science?
I don’t want to conceive. I want to walk every day, without shooting pains going down my legs. I want to sit for eight hours — hell, eighteen if I so please! — without pushing back tears. I want to have sex every day of my cycle in every position. I want to bleed moderately five days a month and feel nothing but a sting and a pinch. I don’t want the see-saw of estrogen and progesterone production controlling my fatigue, nausea, bowel movements or brain fog. I want to plan my month without consulting my menstrual calendar. I want to know what it feels like not to be in pain every day. I want to do all that without being a mother.
So, what can you do for me, medicine? Have you got a clue?
*I acknowledge the fact that Woman is a gender, not a sex. I acknowledge the fact that not all biological females are women. I acknowledge the fact that not all biological females have reproductive organs or menstruate. I’m using the term ‘woman’ in this text as interchangeable with ‘menstruating biological female’ because the text is personal and that is what I am, as well as for the sake of literary flow.
